Ok so I have not been on here since February. It is hard - trying so hard to get people to care about EB, to educate them, to know that people, kids are suffering, it is sometimes OVERWHELMING. And I have two kids and a job so this has to be my side thing. At times I want to give up, because I do not believe I am making a difference. I think a lot of people visit the side but does it matter???? I am a nobody that does not have money or know anyone important or anyone with rich friends or people with influence so I am not able to help with research so I have come to terms with maybe my only contribution is awareness. But am I getting the word out??? I think I was banging my head again since Feb. and wanting to give up but it never fails that I get that message in my heart from Tyler or maybe God. So this morning I happened to check my facebook and saw that I had a notification from the EB Lounge ( I know I do not have kids or even any other relatives with EB but I often pray for the people who post since that is all I can do) and for some reason I clicked on it. I began to sob for this poor boy and his family. I just do not understand why???? Why this has to happened, why so many have to suffer, why did my family loose Tyler??? After 19 years I still do not understand.
And it makes me so mad that everyone knows Breast Cancer, Skin Cancer, Diabetes, Crohns, Heart Disease, Autism-- but no one knows EB. Don't get me wrong, I do not want to offend anyone with any of these conditions but none of these diseases are any more important than EB. And EB is painfully cruel.
Here is the link so that everyone can see EB. https://m.facebook.com/story.php?story_fbid=1195044397186666&id=218155158208933
These pics are horrifying and I have been praying for Jon all morning. My nephew Tyler did not have to suffer very long since his life was cut so short. I can not even fathom how these kids do it for so long with these conditions. WHY????
Please everyone spread the word, share, make a donation of money or time, PRAY.
Please do something to make a difference so we do not have to loose anymore :(